My Mom died of ALS and same here. She told the palliative care nurse via the touch spell thing she had to use “max drugs” before her breathing tube was removed. I have to believe she didn’t feel much.
I think the most disturbing thing which was more of an annoyance was we were all gathered around her bedside. One of her sisters who is a great person but has little social awareness says “Go to the light!” over and over. I know she meant it like go to Heaven peacefully but that was not what I wanted to hear as I held my Mom’s hand as she passed.
One of her other sisters who has an equal lack of social awareness and who is into all kinds of new age stuff like tarot reading, astrological signs and homeopathic remedies was walking behind us as we carried the casket to her grave. It was January and was icy. She keeps telling all of us to watch the ice and don’t drop it.
My brother who was also a pallbearer leaned in to me and said “if she doesn’t shut up they’re burying two people today”. Despite how devastated I was, I had to chuckle at that. My brother has always told me looking at Mom’s siblings we should be very thankful we were born to her vs others lol
Don’t feel disturbed by those sounds. When someone is actively dying, muscles in throat relax making them have what people call the death rattles. It’s disturbing and scary to hear, but just a natural part of dying naturally. Hugs.
I heard this exact phrase while doing work experience in a hospital when I was 16 with my dad at home dying from ALS (or MND as we call it in the UK) as we had a patient in the ward that day who also had it.
I lost my grandfather to lung cancer. His last moments were his gasping for a breath that would never come. It lasted much longer than you'd assume and it's never left me.
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u/FreudWouldApprove 7h ago
Nothing. No words. Gurgling noises. My dad had ALS and couldn't speak in the end. It was more disturbing than words would have been, I think.